This doesn't go away

[Emerald8888]

Hi I had meningitis last August. I got it from an ear infection which got into my skull base. I have had constant headaches. I can't drive at night because of the lights and I can't sit in a coffe shop, I am convinced the people who work there are deliberately throwing the cups and plates against each other as this is how it sounds to me and it makes me feel very aggressive towards them. I can't even have a normal meal with my family because of the sound of the cutlery on the plate. I also have memory and concentration problems and struggle to put the words in the right order which makes me look and feel stupid. My partner is practically done with me feeling so exhausted and having to go to bed all the time. (We only moved in together one month before I fell ill. I do work but I struggle every day. They have no idea how much I struggle. People don't understand after affects. Last month I was feeling not too bad. Headaches decreasing, I was laughing more and feeling some resemblance of normality when out of the blue headaches returned, burning in my bones of my lower legs, all my joints were sore and I was sleeping around the clock. Anyone else had this? Added to the fact that no department takes responsibility for me. Ent say it's neuro and neuro say it's ENT. I was sent to hospital to an acute medical unit where the dismissive consultant made me feel like a time waster. I asked for a sick note for a week for work and the put 'unwell' on it. I feel humiliated .

[Hidden]

Hi Emerald8888, sorry you are feeling so unwell and down, i to contracted bacterial meningitis from an ear infection last May resulting in loss of sight and hearing, some people just don’t understand how we are feeling because I can see a bit they think I have perfect sight, background noise is terrible with my hearing aids,and my mobility is not good as I have balance problems, have had to give up one of my hobbies sewing as I cannot read a litt I have balance problems, I’ve had to give up one of my hobbies sewing as my near sight is bad that I cannot thread a needle,

It’s nearly been a year now and yes I have made progress but it does take time, so all I say is you are not alone keep positive and I wish you well for the future sending love and best wishes X

[Emerald8888 in reply to Hidden]

Thank you Chahanjen for taking the time to send such a heart warming response. Sorry you have had to give up sewing. Big hugs and wish you all the best for the future. Xx

[Hidden]

Have you had a CT for the ear infection? I complained about my left ear for a year before I developed bacterial meningitis; another year went by before anyone connected the CT/MRI findings of mastoiditis with meningitis--and only because I prodded both my PCP and neurologist. By then I'd had VME, too.

I had a mastoidectomy nine days ago. I look like Frankenstein and I'm not sure I have any hearing in my left ear (follow-up with ENT tomorrow) but the auditory distortions have abated. Although there's post-surgery pain, there's no longer stabbing pain in my left eye or throbbing pain in the occipital bone. Best, I don't feel like I'm losing my mind because of the left-sided auditory hallucinations.

[Emerald8888 in reply to Hidden]

Hi yes my MRI showed fluid behind my right mastoid. I lost half the hearing in my right ear for months but it is starting to come back. My ears aren't sore now. I've been lying on the sofa for a week solid. I can't drag myself up. All I'm doing is sleeping. Can't get rid of the headaches, feel sick, aching all over. Feel like I am having some sort of relapse. Drs not interested. They say I'm "complicated".

[Hidden in reply to Emerald8888]

"Relapse" does not sound good.

You know your body. When you have a doctor who writes "unwell" on a work excuse, I don't know what you can do to obtain a LP and treatment before going into an altered state of consciousness. If you have a fever, maybe they'll pay attention; but if your temp runs low to begin with (my normal is 96.0-96.4F), docs may not be concerned about what they consider a slightly elevated temp. I wish I had some words of encouragement.

[Emerald8888 in reply to Hidden]

Just replying is being there, thank you x

[kalirachi]

Hi Emerald, I empathize with your comments 100%. I wish I could offer some words of comfort and reassurance but unfortunately not. My GP arranged for my admission to an acute medical unit in Brighton following two home visits where he was mystified and had increasing concern for my deteriorating condition. I had a fever, was hallucinating, had a skull busting headache from hell, constant vomiting, acute dizziness, photophobia,phonophobia, and had lost my balance completely. After blood tests and a CT scan they diagnosed a stroke. I was put in a stroke section with some very seriously ill patients. Some of them were screaming and shouting all night. They then carried out an MRI brain scan and said it wasn't a stroke and probably a tropical disease or possibly meningoencephalitis. I was placed on antiviral and antibacterial drips for 3 days and then they carried out a lumbar puncture and made a complete hash of it by puncturing blood vessels on the way in with the needle. They finally admitted they had no idea what was going on but suggested it was probably a 'virus'. I was discharged with a diagnosis of possible chronic migraines! Their advice was to rest as it could take a few weeks to recover. I couldn't walk or even stand on my own for nearly six months and was then seen by neurologists who had no ideas other than to refer me to ENT consultants who misdiagnosed BPPV and then back to neurologists who misdiagnosed diagnosed migraines and so it went on. After two years of this I complained to the NHS about this appalling treatment and last September was sent to see this country's leading neuro-otologist in Queens Square London. He had no real answers either to my continuing constant dizziness and imbalance and just told me to try and live life as normally as I can with what is now after 30 months a permanent and seriously incapacitating disability. I do hope you start feeling better soon and have better success than I did at the end of all this.

[Barbaustralia in reply to kalirachi]

So awful but can relate completely though they refused me lumbar puncture probably a good thing

😊

[Emerald8888]

So sorry to hear what you've been through. I think that Doctors don't want to know what they don't understand or maybe they do but they just don't have time, such is the state of our NHS. This is sad as so many of us are left in limbo not knowing for sure what lies ahead. Thank God for sites like this where we can talk to and identify with complete strangers which in turn keeps us same.

[Emerald8888 in reply to Emerald8888]

Sane!

[Barbaustralia]

Yes the bright lights horrible and juicers and coffee machines so bright and sorry to hear the medics just as revolting as in australia r u in uk?